The Layman’s Guide to Autism: What should I do if my relative’s or friend’s child has autism?

Posted on May 31, 2019 by Ann

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At All In, we sometimes get interesting questions from the general public, like “Do people with autism understand sarcasm?” and “How can I tell if someone has Down syndrome or autism?”

The Layman’s Guide to Autism are simplified answers to these real questions from laymen.

Today, we will be answering this question:

What should I do if my relative’s child has autism?

One of my distant relatives was diagnosed with both autism and intellectual disability. She is non-verbal and non-communicative.

Our family gatherings are extremely loud and crowded. I think her parents are afraid of her getting overwhelmed and having a meltdown, so they’ve never brought her to any of our gatherings.

Over time, we started getting really awkward around her parents and she became an elephant in the room. We don’t want to burden them or sadden them with possibly intrusive questions. But I wonder if it’s worse if we don’t talk about her.

We rarely visit them but when we do, we either don’t see her at all or she is being carefully but tightly held by her parents. That makes us feel nervous too so we try not to look at her or interact with her in case it makes her uncomfortable or cause a meltdown. But maybe that is also worse.

My questions are:

When we meet her parents, should we ask after her? Will that make them uncomfortable? What kind of questions can we ask?

We see her so infrequently that we are strangers to her. Are our visits a burden to the family? Should we continue our visits? If yes, how should we behave around her?

Our suggestions:

Given that about 1 in every 100 of our population has Autism Spectrum Disorder (ASD), it is likely that many of us would know someone with autism, no matter whether it is a relative’s child or a friend’s child.

How do you act around the parents of the person with autism, and with the child herself or himself?

We consulted a few parents of children with autism to put together these suggestions.

Should we ask after the child when we see his or her parents?

As every one is different, it is difficult for us to predict how the parents will feel about getting questions posed about their child.

We think it is probably better to have an open and friendly conversation with them as you would if their child is not on the spectrum.

It is possible that the parents are feeling awkward or self-conscious. Generally, having a child with special needs can be a lonely journey. You taking the first step to talk to them about their child can actually make them feel more supported and less isolated.

Generic questions you can ask include:

“How is your child doing?”

“What does s/he like doing these days?”

“How is s/he doing in school?”

As you learn more from the parents, you will be able to ask more specific questions each time you meet, e.g. “Are you still taking time off from work to pick her up from school?”

As long as you are speaking with sincerity and respect, you have done your best for them and they are likely to appreciate your actions.

That said, good intentions are not sufficient to excuse hurting or careless remarks. We might all know an aunty who is a good person but whose thoughtless comments can cut really deep. Here are some suggestions to help us avoid becoming that aunty.

Try to avoid common sympathetic expressions, which can ring hollow for the caregivers.

“God doesn’t give us more than we can handle.”

“I’m so sorry to hear that. It must be so hard on you.”

“Things will get better lah.”

“I know how you feel.”

“I don’t know how you do it.”

Also, do avoid making generalisations, comparisons and jumping to conclusions about the child. If you are not a professional or subject matter expert, you are in no position to judge.

“It’s not so bad.”

“That’s not normal for his/her age.”

“So-and-so doesn’t do that.”

Last but not least, no one is more well-informed about a child on the spectrum than their own parents. If you are not a professional or subject matter expert, please don’t tell them what they should or should not do.

“You should give him/her [this that or other] …”

“You should try this new therapy …”

“You should see this person …”

“You should do this to make him/her … eat/behave/calm down etc”

How should I behave around the child when I visit them?

When you see the child, even if s/he is non-communicative, don’t be afraid to look at the child.

S/he might not look at you or respond to you, but kindness and goodwill are universal and will radiate from you.

There is also the question of whether one should invite a child on the spectrum to social gatherings.

We think that what would be a caring gesture is to speak to the parents and specifically invite the child to social gatherings.

However, this has to be done with the understanding that it is ultimately the parents’ decision as they know the child better than anyone. There shouldn’t be any pressure on the parents to accept or decline the invitation.

If they do accept the invitation, here are some things you can do to make the family gathering a success.

Check with the parents about the child’s diet.

Speak to the parents if possible to find out what would interest the child. If there are particular activities s/he enjoys e.g. drawing, maybe you can set up a small area where s/he can sit comfortably and carry out his or her activities.

Set a room aside if possible where s/he can go if s/he experiences sensory overload.

Ask some family members or friends to take turns keeping the child company so that the parents can relax and socialise too.

Prepare the family members or friends in advance on what to expect. Here are some other articles that may come in helpful: